Friday, September 11, 2009

Important Healthcare "Meme"

I got this one from Stefanie, who got it from Emily.

"This is so important to pass on that I'm tagging everyone who reads my blog to please post it on yours and encourage your readers to do the same (especially those of you who have a huge readership, which I don't), and if you can relate a personal anecdote that highlights how horrible the current system is (one that touched/is touching you or someone you love), all the better. "

So here's my story.

I never gave health insurance much thought. I've always been very lucky to be healthy. I've gone without it at times in my life, but have never had any bad experiences (thankfully). All that changed when my partner got diagnosed with severe Chronic Fatigue Syndrome. This illness, misunderstood and often not taken seriously, has decimated her life. You can read about it on her blog. This has been the hardest thing in my life -- to watch her suffer and to be unable to do anything about it. So, the intial diagnoses was a hard blow. And then we started getting pushback from the insurance company. No, they wouldn't pay for this drug. No, they wouldn't pay for that treatment. And no, they certainly wouldn't pay for one of the few doctors who knows anything about this disease. They wouldn't pay for acupuncture, massage, or any treatments which are shown to help ease symptoms.

So as soon as I could, I switched insurance to the fanciest option available to me at work, a PPO. I enrolled in the Flexible Spending Plan (putting money aside for healthcare not covered by insurance). This helped some. Of course, her CFS doctor still isn't covered by my insurance, and the crazy-expensive drug treatments aren't covered. But some other treatments ARE covered, and we have access to better regular doctors to treat all the myriad side-symptoms of her disease (neurological, gastrointestinal, circulatory, etc.). So that's good. And once we spend $1000 on out-of-network doctors and treatments (the bulk of her treatments), we can start to send in our bills to get partial payment on those bills. Still. That's after $1000.

However, she is unable to work because of this illness. If California did not have legal domestic partnership laws, and if I didn't have access to insurance, she would not have any treatment options at all. That thought scares me to death. She would be unable to see ANY doctor, as she has no income. (and the Social Security Disability system is another topic altogether...)

As it is, because the Federal Government still discriminates against LGBT people, I can't turn in receipts for her care to my Flexible Spending Plan, because it's a federal program. I can turn in receipts for myself, or any receipts which have my name on it, but all those hundreds of dollars spent on doctors visits, treatments, supplements -- which I would be reimbursed for if I had a husband, not a partner -- as far as the federal government is concerned, she's nobody to me.

I'm extremely grateful for my insurance, and for my job. In so many ways, we are incredibly lucky. But all that could change with one shift in the wind, with any number of small things going wrong. If she becomes uninsured, it could be nearly impossible for her to become re-insured because of this pre-existing (expensive) condition. I don't know what our options would be. I don't make a fortune by any means, but I am thrifty and frugal and we've been okay so far. But it worries me, being the sole breadwinner, with so much riding on me having a job.

I don't care who comes up with the plan to fix all this. It just needs to be fixed. My partner, my mother, my out-of-work friends -- should have an affordable, quality option. Nobody should be punished because they can't afford decent health insurance.

Affordable, quality healthcare in 2009 should be within the reach of everyone in the United States (and the world, but that's another argument). It is a crime that it is not. This is not a political issue. It's a moral issue and it's a very important issue to me since it directly affects my life partner and other people that I love. I don't care what the solution is, and I don't care who comes up with it. I think the government has too much to say about too many parts of our personal lives, but I'd welcome a government-sponsored option if it was affordable and if it meant that my partner would not have to be without care if something happened to me. I'd welcome ANY option which meant people would be able to get quality care if they become ill, with ANY disease or condition.

My top peeves are hypocrisy, bigotry, and NIMBYism... which is why I'm trying to keep an open mind. I am trying not to say anything bad or disrespectful about the folks who are obviously very worried about this healthcare issue for all the myriad reasons but maybe are expressing their fears in a not-very-productive way. So I maintain -- if you don't like what's on the table, come up with something better. Please. We need it.


Lara Starr said...

Preach on sister!!

Carl V. said...

What I find troubling is that on the one hand you legitimately point out issues with the government and on the other say that you would welcome a goverment-sponsored option. If the government cannot provide the help people need now (for example, nearly EVERY person who applies for disability gets rejected one or more times before receiving it...I know this because I work in mental health and see legitimately diagnosed, unable to care for themselves people get rejected for Medicare, Medicaid, Social Security Disability every day) then how in the world do you think the government, Democratic or Republican, can be the answer?

The reason these people get rejected is financial. There simply isn't enough money to pay out to all the people who, on paper and in reality, deserve it. The same will be true for a government sponsored health option. Diseases like CFS, which is stereotypically not a 'legitimate' disease in many circles (not me, I've seen it and know its real), may be funded initially but as the costs for these proposed health plans skyrocket out of control eventually tough decisions will have to be made and 'quality care' will not be received by everyone for every illness. It is just not financially possible, even less so with the government footing the bill. Our government hasn't been fiscally responsible for a loooong time. This isn't suddenly going to change with their involvement in healthcare.

I understand your worries. I feel them too. But if all we have to put our faith in is the government, then we should really be worried.

Daphne said...

Carl: I work in mental health too, actually.

I said I'd welcome ANY solution, not just government. I've also lived in a country with socialized medicine and that world didn't end. In fact, they were doing quite nicely. Please don't construe this to mean that I'd like to have a socialist government. Frankly, I just want my sweetie (and all those legitimately diagnosed disabled people) to have affordable health care.

I believe that I can see the faults of my government and at the same time see the possibilities.

I'd like to know what you'd like to see happen. I don't have the solution. I'm hoping that someone will. I don't give a flying fig who it is -- government, some billionaire from Texas, or someone who runs a really awesome book blog. I don't care. I just really think that we can come up with something better than what exists now.

Stefanie said...

Wonderful post Daphne! That is so terrbile that you can't use our flex med account for Terri's expenses too. That is a stupid government roadblock that I hope will eventually be fixed.

Carl's objections are totally legit and I don't necessarily want a public option either, but something has to be done so everyone can have affordable care and if that means a public option for the poorest among us then that's fine by me.

Daphne said...

Hi Stefanie: I agree. It doesn't have to be a public option. We just need SOMEthing! And I hope this stupid government roadblock is fixed too, it's REALLY annoying.

Barefoot_Mommy said...

This post made me sad. Sad because it's ashame that your "partnership" isn't given the same status and consideration as a "marriage," and sad because the health care system really does suck.

We do, we really do just need SOMETHING.

Tammie said...

this was great daphh.

Carl V. said...

For a country that gives its power to the people...and I don't mean that sarcastically...I do wish we could put the brakes on government for a bit and actually give some legitimate experts a chance to float some alternative health care proposals out there for review. What frustrates me about this more than anything is that it has turned into more of a contest than a real opportunity to provide a solution to the problem. I feel this is all being rammed down our throats and the sense of urgency, although real for those un-insured or under-insured, is not so bad that we need to adopt the first thing that comes along and just hope and pray that it somehow works out.

Good discussion Daphne. I don't have a solution either. The problem is for greater minds than my own to solve. I just don't consider the members of Congress, or our President, frankly, to be those greater minds.

Daphne said...

Thanks for your opinion and some good thoughts, Carl. I was just thinking last night that it would be interesting to hear from some non-political minds on this issue.

teabird said...

Stories like yours make me want to throttle someone. Anyone. There is no excuse for any of what is happening to you and your partner.

First of all, your partner should be covered, completely, under your policy, like any other married person would be.

Second, no one except your doctor should have the right to say that this treatment is reasonable or that is not.

Third -- health care is as much a human right as clean air and clean water. If the government can provide payment for the care instead of bills/paperwork having to go through profit-making insurance companies, fine. Funny that people don't mind socialized education, libraries, fire districts, road repair...

I wish you both well.

D'Arcy said...

Okay, I STILL live in a country with "socialist medicine" as an American acquaintance once called it, and our world hasn't ended or fallen apart. I know our system isn't perfect, either - an MRI can take minimum 6-8 weeks to get, with other tests and specialists being similar. But at the end of the day, I am so grateful that I can take my children to the doctor whenever I think they need it, without worrying about if my insurance will cover it.

Kate said...

The state of health care in the US outrages me, it really does. I don't understand how we can claim to be a first world country and still grant health care to only those who can afford it. Teddy Kennedy said it best, I think - it's not a political issue, it's a moral one. (I think you said it too.) I've twice lived in countries with socialized health care and have no complaints about the system. I'm sure it's not perfect, but then ours isn't either.

I'm also outraged that Terri can't share in your benefits. Sometimes I just can't believe this world we live in, how we can call ourselves human beings and hold our heads high.

Susan said...

Hi Daphne - i live in Canada, so you know we have that 'socialized' medical system mentioned. I have to say it's good on the whole - basic coverage for everyone because you are a citizen. Shouldn't that be guaranteed in the US too? If the right to carry a gun is enshrined, shouldn't the right to access for treatment - health care - also be a right for all US citizens? I don't mean to be judgemental, and i don't know enough about Obama's proposal yet to be able to say if it's good or looks possible; I do know because my parents lived in Florida for 20 years, that they came back when surgery became necessary, because there was no healthplan for registered aliens, even though they paid taxes and were eligible to vote. Why can't your taxes go in part towards healthcare, which is how we fund ours?

Nor is this to say ours is perfect, it is not! We do have long wait times, not enough doctors, and many medicines are not covered under the general healthcare plan - I have asthma and diabetes, none of which is covered in the general healthcare system. I have to pay for insurance through work for more coverage and I still can't get some of my diabetes equipment covered! So it's not perfect. It is better than what you have, and reading your post made me see and feel your worries so much, Daphne. I think it's shameful that your your partner can't be covered as your partner.